Thank You

It's been awhile.  I seem to say that a lot with this blog.  So after some gentle nagging (not really gentle at all) from some of my favorite family members, I am going to try really hard to stay on top of this.  If I tried to update you from September it would take way to long so I'll just start right where we are today.

Today:
Mike is on his way once again to Washington DC along with about 170 other advocates for Fragile X.  If there is one thing I have learned since our diagnosis its that we are part of one fierce family.  People who give of their time, money, energy and love all for their children.  Really they do this first for their own children effected by Fragile X and then for all of the other children, parents, grandparents, and so on who are effected is some way.  So for those of you who will stand next to Mike on the capital steps, tell your stories in hopes it might change policies, and walk outside your comfort zone for your child and for mine, thank you, I am so proud of you.  To all the families at home who hold down the fort while your loved one is fighting for policy change, thank you, you are amazing too.  For any body who takes a minute to say a prayer or think about our advocates, thank you, you all mean the world to us.  I am so far from a political person its not even funny.  I do know one thing policies need to change.  How much money it takes to raise a child with any disability is ridiculous.  Families should not have to choose between therapy or eating for the week.   We should not have to figure out how we are going to pay for the things our children NEED.  We should not have to set up special trust funds so that we can secure our children's future. 

Thank you to the most amazing husband and daddy a family could ever have.  We are blessed to call you ours.  We love you more than words can say and we so proud of you.  Not only today but every day you are our families rock.  You work so hard and make so many sacrifices for us.  Thank you for being the man that you are.  Thank you for always trying to make us a better family. 

Tomorrow:
Is spread the word to end the word.  Why do we still need this day?  Why do I keep seeing and hearing the "r" word?  Why are we not respectful and mature enough yet to just stop using it?  Why is it showing up in literature?  Why is it movies and in TV shows?  Why do parents allow their children to say it?  Why to parents and adults say it?  Do you not realize how ignorant you are when you do?  How insensitive you sound?  It does not make you cool.  Just stop!  Just stop its not hard, so many people have stopped using the "r" word, you can too.    

As adults and parents its our job to teach our children how to respect, accept, and stand up for anyone who may be "different" or disabled.  If we don't teach our children who will?  If we don't teach our children compassion and love who will?   There is nothing more disheartening to me than seeing a child being disrespectful to another child or an adult.  It's our job to teach and to model acceptance and respect and most importantly compassion and love.  I've heard for years that children imitate what they see.  Would you be proud if your child grew up to be just like you?  I'm working on this daily.  I am trying to set a good example and raise my children in a home that is full of love and compassion for everyone.  I fail A LOT, but I am trying.  

Proverbs 13:24
Those who love their children care enough to discipline them.

 1 John 3:18
Dear children, let us not love with words or tongue but with actions and in truth.

Next week is spring break and Mike is out of town for most of it.  Lord help me to remember what I just wrote and be still and take a moment to appreciate the blessing you have given me.  Please help me keep my sanity and love.  Amen

Love,
Tina

Fist day of School and a confession.

Summer is over!  I am only slightly sad about this.  I know I am the worst mother in the whole wide world, I'll accept the label.  Don't get me wrong I am saddened by the fact that I now have a 3rd grader (What???) and a P-Kindergartener for the last time.  Next year she goes to Kindergarten...sigh.  But man am I happy I get three hours of ME time.  Like I said the worst mother EVAH.  This summer was brutal.  I am exhausted!!  They drained me these last 3 months.  I need some time to recoup and get healthy again so I can once again be super mom.   Being with my two very different personality children 24/7 for the last 3 months has taken its toll.  There were some days I'm not sure I brushed my teeth.  Days without a shower.  I think for the first time ever I agreed wholeheartedly with Mike's philosophy of "pool clean".  Up until this summer that whole notion was absolutely outrageous not to mention disgusting to me.  This summer it became my survival tactic.  This summer I did the sniff test.  Nope we don't smell too bad  and we don't look like pig pen so lets go to Target.  I am not proud but I will admit that I locked myself in the closet at one point this summer with a magazine and a bag of Dove mint chocolates while I listened for 15 minutes to my freaking out children not being able to find me.  Ok that's not entirely true I listened to Cynthia freaking out and Hayden helping himself to whatever he could find in the cupboards and fridge.  I. DID. NOT. CARE.

Part of my brutal summer had to do with me.  I just didn't feel right.  For the first time ever I was hit smack in the face with the fact that I am a Fragile X carrier and now have issues associated with it.  I always considered myself lucky.  I am not brutally shy, I don't have anxiety issues.  I don't have issues I needed to medication for.  Well...that was until I turned 37.   What the heck happens at 37 that your whole body goes berserk?

I mean you should get a memo that says warning turning 37 may cause weight gain that you will not be able to get rid of, loss of memory,  adult acne,  fibromyalgia, night sweats, irritability, depression, cryonic fatigue syndrome and complete loss of patience.  Warning: being alone with your children for three months straight may increase these symptoms.  Use extreme caution around mother's who unlike you seem to have it all together, this may cause a complete emotional break down. 

I would have be prepared had I gotten the memo.  Where was the memo?   What has happened to me???  I don't want to be around me, I am a mess and it's sure not a hot one.  Unless of course I am having a hot flash then by all means I am a hot mess. So I prayed for the summer to end because I could no longer guarantee the safety of children.

So Today I sent my beautiful children back to school and prayed they'd have a wonderful day.  A wonderful day with calm, patient and sane adults. 

Cynthia my child that asks "what are we doing today" before her head even leaves the pillow, was extremely excited to go back to school.  This girl had ran circles around both me and Hayden all summer.  Hayden my child who is perfectly content with just sitting and seeing what the day brings, was not so excited to go back.  I worry more about him than her.  The first few weeks of school can be brutal for him.  He always has a rough time adjusting.  I was especially worried with the new medication we are trying.  It makes him sleepy and a bit sick to his stomach.  To my amazement they both had a great day!!!  Let's be honest they were probably happy to just be around adults who heads didn't spin around 360 degrees.

All of that said we made some great memories this summer. 

I hope all the kids who went back to school already this year had a great first day!  Now here are some pics of my babies first day to prove to you that they are still alive and healthy!

Yep that's Mr. Not looking at the camera and Miss Attitude

   

Makris Holiday Rooooaaaad trip...Part 2

Michigan will always be home..no matter where we end up, how far away we travel,  Michigan will always be home.  It will always have a piece of my heart and little piece always breaks every time we leave.  Do I understand why we are here in Texas?  Absolutely, and deep down I know it is a blessing that we are here.  It was the best choice for our family.  All that said there is not a moment that goes by that I don't wish I could spend more time with family and friends in Michigan.  I must admit though I am not sure I ever want to do harsh winters again!  I do miss the mild summer's though.

We went home for "vacation" like we do every year.  I was a little nervous going home this year because I had no idea how Hayden would be.  He was off the medication and having a really difficult time with transitions.  It could have been a really ugly situation if he had a rough transistion to the craziness.  We do our best to try and keep things as normal and as routine as possible but it's hard to do.  When we got there He definitely needed his few minutes of quiet (which means sitting on my moms rocking chair and relaxing) but once that happened within minutes of his cousins arriving they were off and playing and never stopped.  One of the things that breaks my heart the most is knowing my kids may not grow up with their cousins.  That's one of the things both Mike and I had the luxury of doing and I always thought my kids would too.  I wonder though would they have as much fun if they saw each other all the time? 

My grandmother was diagnosed with alztimers this year and watching her decline has been so painful.  What an ugly disease that is.  My biggest fear is the day I go home and she has no idea who I am.  Luckily that wasn't this trip.  She may not remember that I moved away or the little things like that but she remembers me and she knows I was the first born grandchild.  We got to see all of our grandmother's this trip what a blessing that is. 

We had a so much fun.  We got to spend so much time with our family.  So many of our friends took time out to come and visit.  I would like to let everyone know that both Cynthia and Hayden  are wondering when our family will come and visit us....Just saying.   

 It's pretty cool when your aunt and uncle have a pool!

 This all started out pretty innocent and turned into one wild water fight

 Cynthia asked Nonnie to save her some snow and she did!  What do you do with snow in July?  You make a snowman of course!

Getting to hang out with Papa is always fun!

We got together to get family pictures taken.  Love that I have these memories preserved.

Ice Cream truck the kids thought this was pretty amazing!

We let a paper lantern go at GAC and GUS's.  Just like in Rapunzel!

Hanging out with more cousins and the kids first time on a slip and slide!

Grandma Alma and Aunt Kathie stopped by to visit.

As you can see we had a lot of fun and adventure packed into two weeks of vacation.  The kids keep asking when we are going back and why we can't see everyone all the time.  Thank you to everyone who took time out to come and see us.  We love you guys and we'll see you next year.  Only this time we arriving by plane!!!

Love,

Tina

 

Makris Holiday Rooooaaaaddd...trip! Part 1

 Well its no secret road trips are not my favorite thing in the world.  I rank them just above dealing with a child who has to make number 2 on a vacant stretch of road (why does this happen to us) and hearing "are we there yet" for the 1,582 time while not even out of the state of Texas yet.  I lost again because I  seriously LOVE my husband... blah, blah...blah.   He talked me into another road trip. A loooong road trip.  We drove home to visit our family and friends.  We made a few stops on the way.  Indianapolis Motor Speedway was one of our stops.  Hayden is going to love this a race track, I can't wait to see his face...are some of things that were said prior to making our reservations.  What thanks did we get from our slightly spoiled little Nascar redneck as he looked onto the track from the suite "It's boring, no cars".  That's right folks we are raising an elite Nascar redneck.  We made him complete the tour without cars on the track.  We are so mean like that.

 We conducted interviews

 Of course we made it to victory circle..we're the Makris family

We kissed the bricks.  The germaphobe in me got over it.  The germaphope in Hayden couldn't.

Our kids Love hotels.  Hayden especially LOVES hotels.  He asks to go to a hotel often.  I find this really crazy with his sensory and transitions issues he has.  He adores them that's part of the reason I can't win the "let's go on a road trip" speech.

What, doesn't everybody sit in a hotel window with their Ipad while watching the cars go by on the express way?  No, well everyone should its really the bomb and it takes your sister forever to figure out where you are.

Nope she is not awake its a figment of your imagination.

One of the reasons I actually agreed to go on this road trip instead of flying was so we could stop and see my family in Tennessee on the way home.  I haven't seen most of them in years and it was so awesome to spend even a little time with them.  They got to meet Cynthia for the first time. We also got to have lunch with a great friend and his lovely family while driving through Indiana.

And of course we had to stop in and see the duck commander warehouse.

She insisted I take her picture by Phil but she didn't want to stand by him alone, He scared her.  I don't get it either.

All in all it was a great road trip.  I went through 1 package of wipes, 2 boxes of tissues, and pulled out the kiddy potty only once on the side of the road, thank you to all the friendly cars passing by who honked at us.  I am convinced that Hayden does it on purpose...I mean really what little boy doesn't dream of doing his business on the the side of the road in a pink princess potty while mack trucks honk at you?  We aim to please little man, you are welcome.  

We traveled through 10 states, saw people and places we would never have seen otherwise, battled a flock of naughty chickens and had a lot of laughs.  Most important we spent some much needed quality time as a family.  What could be better than that? 

Love

Tina

Part 2: Michigan (coming soon)

Our Baby Girl Is 4!!

Wow that year went fast.  I am amazed at how far she has come.  Our fire cracker little girl celebrates her birthday on the 4th of July.  Poor thing didn't even see fire works this year because we were in the car on the way to Michigan.  (That blog post to come) Don't feel too bad for her though she does get two parties.  One here in Texas and one in Michigan.  Last year in her birthday blog post I couldn't show you her picture this year I can!!

Dear Cynthia Diane on your 4th birthday,
You are such an amazing little girl.  You came into our life not that long ago, yet I feel like I'd known you forever.  You just felt like mine from day one.  You will be mine forever and all the days.  You are so easy to love.  Your smile lights up my every day and your laugh warms my heart.  You are non stop fun and energy. I love how curious you are.  I love how you always want to hold my hand and cuddle with me.  I hope that you want to do those things forever.  You've come a long way this year little one.  Talking up a storm and them some.  You've finally hit a spot on the growth charts at the doctor.  You love broccoli...I swear you do.  You love cupcakes of any kind.  I can't imagine why.  You are princess obsessed.    You along with your brother are my whole world.  My goal for the rest of your life is for you to know how loved, wanted and protected you are.  My goal is to make you never feel alone or afraid again.  I love you so much and can't wait to see what this year brings for you.  Whatever it is I am sure it will be exciting and fun.  My fun and exciting little princess!!

Love you all the days,
Mommy

Life in the Makris house after STX-209

We are about a week and a half without STX-209.  Well life in the Makris house is definitely different.  Not as different as I was thinking it would be, but different just the same.  We are seeing a lot of changes, some good, some not so good.  Hayden's impulse control seems to be gone.  It breaks my heart to see him struggle so hard with it.  It's almost as if he knows it not right but he can't do anything to stop it. He will lash out at me occasionally and then say "mom, I'm sorry, I'm so sorry".  It kills me. Cynthia  seems to be getting the brunt of it.   He is pinching and pushing her if she bothers him.  Let's be honest she is three and a little sister so she bothers him a lot.  Most of the time its on purpose and frankly often she has it coming.  He hasn't "hurt" her at all but it is a little rough.  It catches her off guard, she's not used to it.  She didn't know Hayden before STX-209.  She is taking it in stride though.  I've talked to her the best I can so that she will understand what is happening.  She so compassionate and loves him so much that she just seems to understand.  I wouldn't call it  aggression it's more of just agitated and it never really hurts anyone it's just there.  I am praying we can find something that will help with agitation and lashing out.  Hayden has never been aggressive or mean and my goal is to keep it that way.


His anxiety is higher than it has been.  He is having a really hard time with transitions again.  Even small ones within our house.  For example the other day we were finishing up breakfast and transitioning into our summer homework time and he had a slight meltdown.  I had to talk him through what to do step by step. I've heard it called getting past the threshold and that is the best way I can describe it.  He needs extra time and prompting to do some of the most basic tasks.  He needs that little count down or a nudge from me to know its okay to move to something else.  Once we do that and he gets on to the next task he is completely fine.  I just have to remember that we can no longer rush anything.  We have to take it slow with a lot of patience.

One of the first things we noticed was how much he is repeating nonsense phrases and gibberish.  Just sitting there mumbling a whole lot of nothing or moaning.  I really did forget how bad that used to be. 

On the plus side he is talking in full sentences like crazy.  He is answering all of my question with more than just a yes or no.  He is adding his own phrases and opinions more than I have ever seen.  Today at lunch I pulled out chips and asked "Hayden do you want chips" he then replied "Yes, not those, I want these chips" and got the ones he wanted out of the pantry.  Hello, yay Hayden you rock and you can have whatever kind of chips you want.

We seem to be holding steady where we are right now.  I am ok with that.  I was praying first for no change.  I was so afraid we were going to lose him.  That he wouldn't stop talking and no longer have his own opinion and little attitude.  We most definitely did not lose any of that. 

I've had to change the way I parent.  I am not complaining about that.  I wasn't liking the mom I was becoming.  Stress was ruling me more than I care to admit.  We've had some reality checks over that last few weeks so I am trying to change the way I am handling things.  I am yelling less and loving more.  I am over looking the little stuff.   I say "I'm sorry" when I lose it.  I am taking moments to calm down before I react.  Most importantly I'm holding tight to and feeling blessed for this life God has given me.  I don't ever want to take it or my children granted.  I am sure I would have come to this realization eventually but losing the medicine and a few nudges from God have made it happen a lot faster.  For that I am grateful.

 

Love,

Tina

  

Ripping off the band-aid

This morning I gave Hayden his last dose of arbaclofen.  I packaged it all up and set it on Mike's bag to put in the mail.  Three months worth of medication sent in Fed-ex bag.  It's done, what we had so much hope in, is done.  We could have dragged it out.  We could have prolonged it.  I thought about it.  But in the end that's just not what we do.  Mike and I have always had the philosophy of you rip the band-aid off really fast.  You make it quick so you know what you are dealing with.  I can't imagine the emotional toll it would have taken to drag it out painfully.  That way has never been our way.  However, we are seeing some regression already.   Mostly with his agitation.  He is more quickly agitate and has less patience.   He is also fixating (perseverating) on one thing and it seems harder to bring him out of it.  He has gone back to  "moaning and screeching".  I kind of forgot he used to do that.  It all came back to us really quick.  He is however sweeter than ever.  He's doing things to make us laugh more than he used to. That might have a little bit to do with the fact that is now summer vacation. He has been looking forward to being out of school for a few weeks now.  He seems really happy.   I mean really happy. 

I am concerned for what tomorrow and the next few weeks will bring.  With no medication in him will the agitation get worse?  Will we have new issues to deal with?

I think in some weird way we are lucky to be finding out what is going to happen during the summer.  We have the whole summer to figure out where we go from here.  That was one of the deciding factors in starting the titration as quickly as we did and not putting up a fight. This way I can take him to the pool every day.  I can give him the space and time he needs.  We will have time to decide if we need new medications.  We  have time to figure out what those new meds may or may not do.  We will see where the next few weeks and months go.  Again we play the waiting game. 

I am so blessed to part of such a supportive and wonderful community.  Our Fragile X family has been amazing.  How we hope, pray and dream for everyone.  Every struggle is our struggle and every triumph is our triumph.  Tears are shed for children and families I have never met.  Virtual high-fives are given to children and families I have never seen face to face.  Hugs are shared with moms I have never actually touched before.  I have been on my knee's with my hand folded in prayer for families and children I have never shaken hands with.  All of this has come back to our family.  Tears, high-fives, hugs, and prayers have been given for my family.  For the Makris family (San Antonio, TX)  that some have never met, seen, touched or even shaken hands with.   Yet so many hope and dream with us.  This is the Fragile X community I belong to.  This the community I am so grateful we are a part of.  This is the community that will over come this set back and we will all come out stronger and better than before.  Because that's who we are.  God gave us this life and connected us in way.  He will pull us out, It may not be tomorrow, It may not be next week, or next month or even next year.  Clarity, peace and contentment will come again.  Until then I will continue to pray, cry, high-five and share hugs with you all.

"I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future" Jeremiah 29:11

Love,
Tina

 

I will be positve, I will be positive, I will be....

I have been reluctant to write this blog for so many reasons.  Mainly because I am trying my hardest to stay positive.  We were informed on May 15th  first on FB and then by our study coordinator that the drug trial (arbaclofen) Hayden has been on for almost two years was abruptly ended because of funding.  The medication that we were told he could be on hopefully until it was approved by the FDA, would no longer be available.  This news shook me to the core.  To say it surprised us and our clinic would be an understatement.   The first few days I was just in shock.  I am sure it helped that I was really sick so I was a little slow in processing it all.

Then I finally did what I didn't want to do.  I looked back at my notes of when we first started taking the actual medication.  "increased verbalization", "Hayden seems calmer", "Hayden can answer my questions consistently" "he's joking with us" "we were able to go to the restaurant without Hayden freaking out" that's what we saw at home.  At school "Hayden is engaging with his peers"  "I can't believe how much he is talking" "He's is understanding concepts better".  I really want to stay positive.  Hayden just knows if I am a mess and if I freak out.  It effects him negatively.  If mom is freaked out then he is.  We just have that connection.

 

Again because I am trying to stay positive we have also seen Hayden at his absolute worst on this medication.  See blogs from the beginning of the school year.  So in my heart I am clinging to the the hope that what was saw was growth more than medication.  Hayden was on a low dose in comparison to some kids.  We often would ask ourselves "what do you think this change is due to?"  "Is it medication or growth"  "Is it the changes we made at school and at home or is it the medication?"  My guess would be a combination. 

We have started the titration process.  We are four days into the coming off the med process.  Hayden has been sick (not medicine related) so the changes I am seeing, I am hoping are because of that and not a lower dose.  What will the next few weeks hold for us?  Will we lose a part of him?  Will we loose the joking, affectionate, silly little man?  Will we loose the little boy who pick on his sister and does silly things just to make us laugh?  I don't know.  I just don't know.  I will figure it out, cause that's my job.

So in just over a week I will reluctantly ship back almost three months worth of medication.  Medication that was that little bit of hope we were clinging to.  At that moment we will then start over.  I am hoping his regression is minimal.  I am praying I know what to do when these chemicals are not longer in his system.  I am praying I know what to do if the regression is more than we are hoping.  I am praying I can help Cynthia to understand if her brother is different some how.

I have been reading so many Fragile X blogs about this subject and my heart breaks for so many families.  Families that on so many levels are our extended family.  Families that I have prayer for, laughed with, cried with and celebrated with during this drug trial.  Families that prayed for us as we started this trial.  I can feel the desperation in their blogs.  I experience the same fears they have right now.  Fear that is now turning to anger and frustration because it seems so unbelievable that the only answer is funding.  What happened a week before when I received 3 months worth of medication?  Or less than a month ago when I breathed a sigh of relief because the extension was approved for one more year.  I thought we were safe for one more year at least.  What Happened in that month?  Did anyone not see this coming?  How could so many families be toyed with this way?   I don't have these answers.   The more I find out the more I don't want to know.

I ask that you keep Hayden and our family in your prayers as we navigate what is to come.  Please pray for all the other families that are effected by this.
 

Love,
Tina

Gotcha Day!

One year ago today our household was forever changed.  In tumbled one of the cutest, brown eyed little girls I had ever seen.  From the moment she walked in I loved her.  From that moment no matter what happened she would always have a piece of my heart.  Even if she didn't stay, I would never be the same.  I knew from that first moment that if we had to give her up it would tear me apart.  Luckily that did not happen and a little over six months later she officially became a Makris.

 

March 30, 2012

March 30, 2012 will always hold a very special place in my heart.  That was the day she became my daughter.  The day that Hayden became a big brother and the day Mike became a daddy to a little girl. 

It's funny how God knows what you need before you do.  We thought we knew what we wanted.  A child under two.  That was pretty much out only criteria.  Our home study started going out.  Some we didn't get chosen for, some we prepared our home for and for whatever reason placement fell through.  At the time that was so heartbreaking.  One we welcomed into our home for a few months and he found his forever home somewhere else.  After taking a break and grieving that loss for a few months.  We were ready for our home study to start being submitted again.  I got picky saying No to a lot of situations.  Setting our criteria a little (okay a lot) more "picky".  I only wanted a baby don't even submit unless the baby is under a year old and low risk.  So for a while it was slow.  The whole time thinking I was ready to say we're done.  I was happy with my family of three.  After Hayden got out of school for the summer we would say we were done.
Then we got a call on a 2.5 year old little girl named Cynthia and for some reason my heart said yes.  She was very low risk so I thought there were tons of names going in on this little girl.  Our chances were slim so why not.  I remember hanging up the phone and praying like I always did "its in your hands God, if it's meant to be then it will be".  A few weeks went by and frankly it was not even in my mind any more.  I got the call on a Monday saying They'd like us to come to the CPS offices and meet her.  So on Wednesday we went down to CPS and the cutest little girl walked right past us and I remember thinking "man I hope she looks like that" and feeling a little sad that they walked by.  Then they called our name and I thought I was gonna lose it when the case worker introduced us to the little girl that walked by.  She grabbed my hand and we walked into a room and that was it.  That little girl held my heart from the moment she took my hand.  I think she had Mike's when she sat on his lap.  When the meeting was wrapping up the case worker looked at us and said "take a few days to think about it and call and let me know".  Mike and I both looked at each other and said "there is nothing to think about when can we take her home".  Two days later she was in our house and in our lives forever.

Cynthia Diane Makris...thank you for making me a mommy for the second time.  I will love and protect you all the days.

Love
Your mommy

My Baby is Eight!!

My baby is eight!!  When did this happen???  It seems like just yesterday we were waiting at the hospital with our family and friends for him to arrive.  Waiting and waiting....

I've said it before and I will say it again, I became all I ever wanted to be on March 18th at 5:28pm.  That is  when I became a Mom.  That is when I held my little boy for the first time.  That is the moment my life all made sense.  I knew I had the most important job I would ever have.  That nothing else mattered but raising this little boy.  Hayden Michael Makris made me a mommy on that day and I have loved every single minute of being his mommy.

He was perfect!  I know every mom says that but he really was.  He was the cutest baby I had ever seen and so many people said the same thing so you know it's true.  A very long journey had come to end that day.   I decided on that day that I was not going to miss a minute of his life.  I was going to be there as much as I could for EVERYTHING he did.  That's why I am stay at home mom (and because I am a control freak).   Nobody could raise him as good as I could so lets just save everyone the headache and become a full time mommy.  Hayden you have brought so much joy into my life.  I am stronger and more loving than I ever thought I could be.  You make me want to be the best mom ever.  I only hope I can live up to everything you think I am.  Happy birthday my angel boy. I love you yesterday, today and tomorrow too.

Mommy.

Hey...guess what I found a keeper!!

Let me start this post by saying I KNOW how lucky I am.  I know I married an amazing man.  I knew it the first few times I was with him.  I knew he was different.  I knew from the start that this man was going to make a wonderful father and very loving and faithful husband.  I knew very early on that I was going to marry this man.  My parents knew that he was different after our first date.  My mom told me I glowed.  Then when they met him for the first time and Both of them liked him.  I knew this was for real.  That this man was a REAL man.  I knew when he wanted to take me out again after the first time he met my father that it was going to last.  You see, when Mike met my dad for the first time my dad was dressed in a tank top, bathing suit, cowboy boots, a coon skin hat and he was examining his double barrel shot gun.  Yes ladies and gentlemen Mike asked me out again.  We have since April 1st 1995 never taken a break from each other.  He then and always will be the last person I want to say goodnight too every night.  When he FINALLY asked me to marry him of course I said YES!!  Again, I know how amazing this man is.  He makes me whole, he makes me feel loved, he makes me feel special, he makes me feel like I am the only woman in the world, he makes me feel sexy, he makes me feel secure and makes me feel these things every day, even when I don't deserve it.




We don't really fight, ever, its weird really and we ask ourselves often if we are normal.  I cannot remember a time we have ever had and argument that was resolved quickly.   In our relationship like every other one we have had ups and downs of course.  We have had hard times.  One of the hardest was when Hayden was diagnosed with Fragile X syndrome and we found out I was a carrier.  He could have walked away.  He could have said it's too hard.  He could have told me to deal with it and been unsupportive.  He never did, he held me while I cried and grieved.  He told me there was no body else he wanted to be with, no matter what happened.  No matter what we were in this together.  Whatever Hayden needed we would tackle it together.  We would face every challenge united.  We would and we do stand together as the first line of defense against all of the Fragile X heartaches that come our way.  We stand united in triumph as we witness the miracles of Fragile X.  I cannot imagine life without this man.  I cannot imagine what it would be like to not have such a supportive partner.

I am always proud of Mike.  He always make me proud to be his wife.  Today however my pride swells a little bigger as it does every year for the last 5 years at this time.  Today Mike is in Washington DC for the National Fragile X Foundation's Advocacy Day.  He will tell our story and make  requests on behalf of the almost 1 million Americans living with a Fragile X Disorder.  Tomorrow he be in several meetings on Capitol Hill where he will tell our story to help make the future a better place for Hayden and for me.   He won't do this alone.  He will be surrounded by almost 200 advocates that will share their own stories of the people they love so much.  They will all stand together to bring awareness and funding for Fragile X.  Almost 200 members of our Fragile X family will take part in one of the most important and emotional days that they have ever been a part of.  From the bottom of my heart I thank you, all of you!

So yea I know I married the most amazing man.  I am thankful every day for it.  Some people say that their spouse makes them stronger.  I disagree with Mike I don't have to be strong.  I can be weak because I know he will be strong for me.  I can stay in the security of arms and know everything will be ok, that he will forever have my back.  When I have to be strong I know that he will make me strong.  He will always be my biggest fan and give me the confidence I need to take on the world.  I am a very lucky lady.  He is the most amazing man I have ever known and I've known some pretty great men.  I love you more than I will ever be able to express to you Mike. 

Tomorrow is also spread the word to end the word day.  If you want more information check this out.

 http://r-word.org/
or
 http://ourfxjourney.blogspot.com/2012/03/advocacy-and-stupidity.html
or
http://ourfxjourney.blogspot.com/2011/03/wow-wow-is-all-i-can-say-about-week-im.html




I cannot express enough gratitude for the family and friends who over the last few years have told us they no longer use the "r" word.  Its mean everything to us.  To the family and friends who have apologized because they have used it in front of us, I thank you.  To some it may seem really small but to me it's huge.  Every time you use it you are making fun of somebody with a mental disability.  If you would like a list of words you can use in place of the "r" word let me know.  I'd be happy to send you a list.

Just a side note Hayden will be participating in his first Special Olympics Event on Friday.  Is it appropriate to paint my face and write his name on forehead?   Is it tacky to paint his name all over my car?  Be prepared for FB to blow up with pictures because Mike and I will both be there with our Faces Painted...ok maybe not but there will pictures, lots of pictures.

We did get the results of Cynthia's sleep study and more tests are needed.  For now I will leave it at that until we get more information.   Please keep her and our family in your prayers as we await more results. 

Love,
Tina

2013

I swear it feels like I was just saying "wow it's December already" and now it's 2013!  Time flies when you're having fun.  I don't have a fancy recap of 2012.  I don't have the time to look back at the year and analyze it.  What's the point really?   it's over, look forward.  I will cherish the good and learn from the bad.  I tend to spend most of my energy freaking out about the future rather than freaking out about the past.  I'm real mature like that ;).   For those of you who want a little bit of a recap here you go.  Hayden turned 7!   He went to his first Nascar race and loved every minute of it.   Now he doesn't want to watch Nascar unless he goes to the track.  He's a bit spoiled.  We adopted a little girl named Cynthia and we loved every minute of it.  She turned 3 and tells me she loves me all the days!  I laughed, I cried, I was confused, I was completely certain.   Mike went duck hunting.  We lived a lot, we learned a lot, we loved a lot.  It was, as they all are a very blessed year. 

Mike refuses to make new years resolutions.  Personally I think he makes them but doesn't tell anybody about it.  He's super smart like that.   I on the other hand make them every year and blab them every year.  Unfortunately I usually don't stick with them very often.  Looking back on last years...oh wait I only look forward, that's right.  Who cares about last years resolutions.  This year my resolution is to be the best me I can be.    I'm not getting any younger and Lord knows dieting isn't getting any easier.  Forty is nipping at my heels and I want to be in the best shape of my life before that happens.  When did 40 become closer than 30?  Duh, when I turned 36.  Is it sad that I had to ask Mike how old I was going to be?  I actually thought I was I was going to be turning a year older than I actually am this year.  It must be my mature way of thinking.  I joined a gym this year and I'm not hating it.  There is usually some point during my workouts I plot to hurt the instructor or one of ladies in the front row who are way to enthusiastic.  Other than that I am doing good.  I mean I haven't ACTUALLY hurt anybody.  So that's good right?  Again it's real mature of me.

Then there is the whole time management goal. I stink at time management.  I much prefer surfing the internet over cleaning.  My life would be so much simpler if I just did things throughout the day.  Instead I sit around, tidy up, sit around, straighten up this...then the panic sets in as the clock hits 4:30.  Oh smack my husband is going to be home in less than an hour.   I must make it look like I did more than just create a loving a nurturing environment for my two children all day.  I must start dinner and mad dash pick up the house.  Come on I am not the only one...right?

Away from resolutions.......

Hayden:  we are finally getting life back on track for him.  We are getting Hayden back.  YAY!!!  He's our fun loving little man again.  He's doing much better in school and at home.  Christmas break was a turning point.  I think he needed that break.  I think he needed to be home and relaxed for a couple of weeks. 

Tomorrow our cupcake goes for a sleep study.  I don't think I have shared this on the blog, but here it goes she bangs her head at night.  I mean she really bangs her head at night.  To the point where she needs to wear a helmet and at least once a week wakes up with bruises around her eyes and nose.  It's heartbreaking.  We can't stop it no matter what we try.  Most of the specialist we've seen have said it's just something she does and "hopefully" she will outgrow it soon.  Nope didn't like that answer, so I pushed for a sleep study.  We are going to rule everything out before we just say its something she does.  More than likely it is nothing and has a lot to do with what happened before she came to us.  Now it's just a habit she can't break.  I just ask for prayers.  I'm not sure for what but pray that we get to the bottom of it and it's nothing serious.

So tomorrow I will go and "sleep" in a bed next to her.  Watch as she bangs her head and not be able to do anything about it.  She won't be able to wear her helmet because she will be hooked up to monitors.  I am so worried she is going to get hurt or bang her head to hard.

If you think about us tomorrow please say a prayer for her.

I hope everyone Is having a wonderful 2013 so far.  Here's my goofy babies over Christmas.  I think my heart just melted. 

.

Love
Tina

Is this about me or him??

I heard that phrase a few times during a recent visit with an awesome Fragile X family, a family that I am so happy to call friends. It was amazing to watch Cindi and Chris Rogers parent.    I learned so much.  It was so great to pick their brains while they were here visiting.   Hanging out with them and their boys was SO MUCH FUN!!  In the beginning I thought that's all it was, one FX family getting together with another FX family.  I didn't know at the time how their words and their parenting would shape the next month in our lives.   Mike and I had no idea how much we would lean on words that were said or concepts that were touched upon in simple conversation.

You all know if you read the blog regularly that Hayden is having a pretty rough year.  The toughest we have seen not only at school but at home as well.   I haven't wanted to blog or even talk about it. Frankly it's been heartbreaking to watch and believe me I have have had to watch A LOT.  Hidden in closets so that I would not be seen to observe what his day is like.  It seemed so cruel to me for the district to ask me to compare my child with his "typical" second graders.  I mean hello...I know he's not like a "typical" almost 8 year old child.  Why do I need a reminder??  I have an almost 8 year old who still loves "goodnight moon" and an almost 8 year old who can't ride a bike, or read or do math and I have an almost 8 year old who can't tell me what he wants for Christmas.  I KNOW the difference.  I see it everyday in my community, on facebook, and all around me.   I watch as his three year old sister does things that he can't.  He has a hard time when daddy takes him to school cause that's not our normal routine.  He has a hard time when any little kink gets thrown into our normal routine.  Why do I need to go and "watch" him in a class of his typical peers???  Why???   But I did it and I can admit that after I put the emotions to the side (yeah that's me crazy mom crying to the gen ed teacher) and really watched, it was eye opening.  These words kept coming back to me "this is more about you then it is him".  I had to ask myself several times  "who is this about?"  "who are we doing this for"?  Realizing that it was about ME and it was for ME (I can be selfish like that who knew?).  Realizing that I had a little boy who was so frustrated and overstimulated in a situation that "I" thought was the right situation.  In a situation I pushed for because that's what I was told I had to do.  This was about me and not Hayden.

These last few weeks have opened my eyes to a whole new way of thinking.  It has opened my eyes to look at Hayden differently and to look at what his needs are.  I am so thankful for an awesome Special Education teacher that goes above and beyond what each individual child needs.  I got to watch an entire lesson that was taught laying down cause that is what Hayden wanted to do.  I got to watch my little boy be happy and successful.  I got to see how proud he was of himself because he WAS successful.  We now do homework laying down or sitting on the floor instead of at the kitchen table chair.  These things that I so selfishly thought I had to do.  I mean really sitting in a seat is so overrated anyway.  Google employees don't sit in chairs they sit on balls and they are supposed to be the happiest people around.  So maybe he will get a job at google someday.  Is there really anything better than to see your child successful no matter what it is or at what level they are at?  I have had to let go of some of my expectations and realize he's just not there.  I have had to ask myself questions I didn't want to ask or even think about.  I have learned though that once you take the first step the second is easier and the third even easier.  Am I giving up on my goals for Hayden?  Not at all...I'm just reevaluating how we get there and how long it might take.  In the words of my husband, we are "going back to blocking and tackling".  I think it means we are going back to basics.  I know we have had a lot of huddling and very few touch downs.  But the touch downs that we have had have been amazing and we would probably get penalized for excessive celebrating.  So for now we take a step back, go back to basics and start thinking about what is best for Hayden.  I have looked at Hayden with new eyes.  Lately those eyes have been tear filled.  I have seen the ways I have failed him and I am trying to make that better now. 

Moving on to Cupcake..it's still hard for me to type Cynthia...lol  She is having a sleep study done next month.  That's another blog post for another time.  Please pray that we find answers to her sleeping troubles.  Can I say I want answers but nothing too dramatic?  Can I pray for that???  Again sometimes I can be selfish I admit it!!  She is talking up a storm and doing what all good little sister's do...driving her big brother a little bit crazy.

Me well I feel like I am treading water in one place and not going anywhere.  I feel like one thing gets resolved but there are four more waiting.   I feel like one mess gets get cleaned but there are eight more waiting and two more messes currently getting created.  I know I am the ONLY mom who feels this way.  EVERYONE else has it totally together.  Every other mom is feeding there children four course meals and has all the Christmas presents wrapped already.  I just know it's only me treading water and not going anywhere.  But, hey I bought a pair of non mom jeans so life is good.   Honestly in light of recent events I am blessed to have IEP's and sleep studies and messes.  I am blessed to have noise and two little children fighting.   I am blessed on Christmas morning my babies will open their presents that I have wrapped.  I am blessed to be treading water.
 
 

Love,

Tina

Heaven and Earth

A few blogs ago I talked about the posts that get put into drafts for some reason or another.  This is one of those posts.  I figured it was now or never.  It was written very early on when we got Cupcake. I didn't change any of it except the ending.

I look at this little girl so filled with emotion I have no idea what to do with.  It's like March 18th again.  The day I gave birth to Hayden.  Except I did not give birth to her someone else did.  She is not even technically "mine" yet.  However, I look at her and know just like I know with Hayden..I would lay my life down for her.  I would sacrifice whatever I had to for her.  I would move heaven and earth just like I would for Hayden to see her smile.  I cannot imagine my life without her.  From somewhere in the back of my mind the guilt comes.  I am taking another mommy's baby.  Someone else loved her first and lost her.  That woman's loss is my gain.  That woman that do not even know.  I cannot imagine the pain she felt or the loss that went through her.  I can't imagine what she is feeling now.  Does she hate herself?  Does she hate me?  I've had this little girl in my life for only a few weeks and I don't want to know what it would be like to loose her.  I don't ever want to loose this little one and pray that never happens.  I've seen the file I know the kind of life she was dealt.  I know that it was troubled from the beginning.  My heart breaks at the trauma one little girl has had to endure.  My heart breaks at the trauma and rough life her biological mom has had to go through.  Her loss will be my gain.  Does she think about her?  Would this life we are giving her be the same kind of life she would have dreamed for her?  Would this be the life she would have given her if she could?  Am I doing what she would have done if she could?  I wonder what I would say if I ever ran into her?  Would she recognize her?  How do I answer the questions...why don't you have baby pictures of me? Why did you take me from her?  Why didn't you have a baby of your own?

Can I meet my biological mom?  I would like to say that I would be supportive of this one should she ever want too, but, I know I would die a little inside.  Because what if she doesn't love me as much?  What if the bond they have is greater?  What if she's mad at me for taking her?  What if I can't explain it all in a way she will understand?    What if she wants to see the file?  Do I protect her from that?  Do I show her?  Do I even keep this file if it all goes through to adoption?

How do I explain how much I love her and how much I wanted her?   How much I promise to move Heaven and Earth for her.  How much I would give my own life for hers?  How do you say to a little girl that's not even yours?  Will she someday understand?  Will I even get to tell her all of this someday?  Will she be mine forever?

Three days from now I will get to show her for the rest of her life how much I love her.   I will get to move heaven and earth for her.  She will be mine forever.   I will pray that when the time comes all the words come out right and love shows through.  I pray for the mommy who gave birth to her.  I pray that wherever she is she finds peace. 

Love,
Tina 

We have a date!!! We have date!!

We didn't see her first steps....but we will see every step she takes from here forward!

On October 19th in a private ceremony in front of a judge...Cupcake will officially be a MAKRIS!

I am going to stop now cause emotions are pretty high.....

Thank you so much to everyone for saying prayers and for hoping with us.

Pictures will follow as soon as we get home!

Love,
Tina

To post or not to post

This is one of the posts that has been written and rewritten and deleted, then written again.  I have a few of those in my drafts.  You know the blog posts that just feel too personal or too ugly or not positive enough.  Maybe I'll post them or maybe I won't....

I am usually one of those FX mommies who rarely complain about the life God handed us.  I rarely get depressed about Fragile X.  I try really hard to not beat myself up.  Toot-ta-ta-toot (that's me tooting my own horn)!  I learned very early on that being depressed or getting mad about it helps nobody.  It doesn't make life any easier in fact it make life unbearable.  Who wants to be around a negative my life sucks person?  Not me!!  Sometimes though I go there.  I get mad, I get sad, I start to blame myself.  I can usually bring myself out of the downward spiral really quick.  The past month has not been one of those times.  It's been probably the hardest time since I can remember if not ever.  Hayden had a really rough transition to school this year.  I mean REALLY ROUGH.  I've never seen anything like it with him.  I walked to the car and cried more than once every week for a month and almost every night.  We were getting reports home like we have never seen.  Hayden destroyed the classroom, Hayden came out of the bath room naked, Hayden is being violent towards other kids and teachers, Hayden is eating his assignments.  Day after day after day we were getting reports like this.  The more I tried to pull things out of our bag of tricks the more things failed.  We knew the start of school would be rough it always is but this was beyond anything I could have imagined.  I was at the point of not having any idea what to do.  I hate that helpless feeling.  I hate not being able to help him.  I watched as my easy going little boy changed.  I mean I didn't recolonize him.  He was mean and distant.  I blamed myself...I did this...my genes.  I prayed, I cried, I pleaded.  Anything just please bring him back, I'll do anything.  Daily notes and calls with the teacher, observations, talks with the principle and so much more was going on.  The worst part was everybody was stumped.  We talked about what it would take to change schools.  We talked about med changes and maybe adding more meds.  One call changed our world...one call...a call I made to the teacher saying "please understand this is not Hayden, this is not our little boy" and she said "I know we are working on the problem and we are going to fix it".  I have never in my life felt like a weight had been lifted, like I did in that moment.  I mean really who is going to believe the mommy?  Every mommy says their baby is the best and would never do any of these things.  No really my baby is the best and has never done any of these things.  We implemented med changes at home and they implemented a lot of changes at school.  Whala my little boy is back.  It's like we have a whole different little man.  I have no idea what was happening in that classroom but thank goodness everyone was able to fix it.  Thank goodness Hayden has a team that does not have their heads in the sand with the attitude of "lets wait and see".   Thank you to everyone who I cried to or turned coffee's and lunches into a complain session.  Thank you to the few people who knew what was going on a prayed with me.

Cupcake - we are waiting on go.  There has been a date tossed out there but It's not definite yet.  Wating...waiting and waiting.   She is loving everything about school and how social it is.  She's at the age where she is still innocent enough to tell on herself.  Here's a tidbit of what our conversations are like ...
M: How was school?
C: Good....sit down (in a very stern voice).
M: Did the teacher tell you to sit down?
C: Yea a lot.  (giggle)

So I am really working hard on trying to loose weight as I have told you all before.  I am my first 20 lbs down and ready for new jeans.  Finally ONE. SIZE. DOWN.  Being shorts really stinks.  Anyway, it seems like all over the internet everyone is talking about mom jeans.  I follow a few blogs and they are talking about the evil of the "mom" jeans with very specific criteria of what "mom" jeans are and are not.  I am stressing out about this people!!  I find myself checking out other woman's butts and assessing if they have "mom" jeans on or not.  What. is. wrong. with. me? I am checking out butts of other woman.  Yep now all my friends are gonna make we walk in front.  It's for research people geesh don't get your "mom" jeans in a bunch.  I can firmly say that there is a difference and those "mom" jeans not very attractive. Even nice butts don't look good in "mom" jeans.  I have been finding myself getting excited when I go through the check list and determine that a pair of jeans are not mom jeans.  Then I have to stop myself from asking the person what kind of jeans she has on.  Cause you know that wouldn't be creepy at all "hello lady I have never met before, your butt looks good, what kind of jeans are those?"  Any way I am too stressed out to buy jeans because A) it's too much criteria to think about and B) non "mom" jeans are really expensive.  Surely not all my jeans are mom jeans right?  Yep they are...sad very sad..More to come on the "mom" jean saga....maybe

Love ya,

Tina

Conference, Adoption Attorneys, school starts...oh my!!

I am going to try and put a whole lot of information for all of you in one short blog.  The kids are currently engrossed in Fresh beat band.  Yes we have moved from Dora to Fresh Beat Band.  We're even starting to get into Max and Ruby.  What is up with Max and Ruby?  Do they not have parents??  Are they out doing what rabbits do while their kids are baking cookies and getting bunny badges?  Why does the grandma take them on vacation?  Are Louise's parents aware that there are no adults at home?   Anyway moving on now....

Fragile X conference in Miami.  This was the first conference that I did not beat myself up.  Never once did I call myself a bad mom.  Don't get me wrong I had a lot of duh moments and oh crap why have I not done that???  This was also the first conference I came home and actually implemented what I learned.  Why did I do this for the first time, because I spent more time taking it in and learning than beating myself up.  For the first time I looked at the older boys and thought "look how happy they are" and "I hope Hayden is always that happy".  Don't get me wrong I have high hopes for Hayden and I always will.  But, as long as whatever he is doing he is happy doing it...that's ok.  Lets be honest do you really think the president is happy anyway?  So you know what I'm ok with Hayden not being the president someday.  This was also the first conference I socialized...I mean really I met new people, hung out with some really great friends and ate way to much food.  I love all of that about confernce It's like one big family reunion of people you don't know and some that feel so much like family that it hurts when you leave.  It's so hard to "hang" with kids...you know cause somebody needs their butt wiped or is trying to dress the cat.  So going to confernce without kids gives us the opportunity to socialize, hang out way to late, sleep in, get starbucks every morning. Not to mention eat out without having to a) scarf it down so fast because someone wants to watch cars or b) sit forever after everyone one else is done and table next to you has had three sets of new customers because somebody eat slower than winter comes in Texas.  All of this would not have been possible without my mom Thank you so much for watching the kids so Mike and I could enjoy another conference.  We had a great time!

We have "hired" an adoption attorney!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!  We have started the paperwork.  Now I am just waiting for a date, still waiting, still waiting, when is it going to be???????  Who do I need to call to get a date already?????  There  is very little that can go wrong but still there is that small chance until everything is signed I will not be relieved.  We are one small, slow, baby step closer.  I told you I am not patient right?  Keep praying with us please.

School starts this Monday!  Panic Attack, Heart racing, ...holy crap!!!  I am freaking out...not because I have a little boy in the second grade or my little girl is going to big school.  Nope I am freaking out because I have to get two kids ready and out the door at the same time, for the first time EVAH!!!  Go ahead laugh at me, I'll wait.  Are you finished?  Ok moving on....Cupcake starts early intervention preschool and Hayden is going into 2nd grade...sigh.  We have our backpacks and our lunch boxes and a lot of school supplies.  We have our first day of school outfits picked out...kind of...one of us keeps trying to decide if she wants to wear a dress or pants and the boy is refusing to wear a button up shirt because only daddy wears shirts with buttons.  So we'll see what Mondays pictures look like.  For the most part on the outside it looks like I'm one put together mommy.  I am so not one put together mommy.  I made sure the tissue box in the car is full and I made Mike take the day off.  I need support, I admit it.  I fully intend on dropping the kids off and staying strong, waving goodbye, giving the big mommy hugs they like and then going to starbucks...and crying in my grande, non-fat, iced, caramel machiatto.  Mike will tell me several times that I cannot go peek in any class room window's cause you know they arrest people for that.  Then he'll tell me that nobody has stolen my babies while they were on the playground and no you cannot call the school and ask them to check.  Then he'll say maybe while the kids are at school you can clean up the house...then I will have to beat him with my meat masher....yep that is our first day of school cycle.  What can I say I like routine...maybe I can make a picture schedule for me.  drop kids off, get in car, clean snot off  face, starbucks, eating chocolate in closet, physical restraint, pick up girl, check for physical trauma, pick up boy (what? he's not riding the bus on the first day), check for physical trauma, ice cream.....start it all over again the next day.....
 


There you have it!  In a nutshell our last few months.  Hope you all had a wonderful summer and are ready for school to start.
Love,

Tina  

Disclaimer...nobody proofed this and I had 20 minutes to get it out the door...don't critique it...that's just really annoying...love you!!